Tag Archives: healthcare

In Part One, I shared the story of what actually happened to my ear. Here’s the rest of the story (with apologies to Paul Harvey).

What I Learned Through This

I’ve been dealing with the whole left ear thing for about 6 months now, and I’ve learned a few things in that time:

SSHL can hit anyone at anytime: One of the ways I’ve always handled situations is to get as educated as possible about the topic, so I’ve read a LOT about SSHL and know there’s nothing I could have done to prevent it. It just happens. So sleep well tonight, everyone!

Hearing loss has been tied to accelerated mental decline: This was surprising to me, but after reading about it, it makes sense. I notice I’m more withdrawn in group situations, and I still have one great ear! Imagine having almost no hearing. Experts think that the gradual withdraw from all social situations impacts brain stimulation, which can accelerate dementia. They aren’t sure yet, but the National Institute of Health has a study that will be completed in the next few years that should shed some light on it.

Hearing aids are wicked expensive and seldom covered by insurance: My hearing aids will cost more than $3,000. If I was under 18, they’d be covered by insurance. For adults, there is very limited support. Even Medicare doesn’t cover hearing aids fully (if at all). I’m lucky to be in a position where I can afford them (as well as the constant purchase of batteries). The fact they aren’t covered, and yet may help those suffering from cognitive decline, really bothers me. Luckily, Costco and other discount offerings are available for some models. [Note: In a kind of cosmic circle of life, my mom reminded me that my late Uncle Billy had multiple patents on hearing aid technology. It would be kind of cool if his work ended up in my ears.]

Diagnosis and treatment took a lot: All told, I had 1 urgent care appointment, 3 specialist appointments, 1 MRI, 1 CT-Scan, and 1 hearing aid fitting. Oh, and I still need to actually GET my hearing aids, then do a follow up, and get yearly checkups. All of these appointments have happened at different times and at very different locations (opposite ends of town). Because I have good insurance and a job where I’m allowed to leave for doctors’ appointments, this wasn’t (much of) a problem. My out of pocket was negligible (yeah – even with an MRI and CT-scan). I can’t imagine what I would have done if I was in an hourly position trying to juggle childcare and no sick time, making $11/hour with a high deductible healthcare plan. We really need to work on this as a society and not make basic healthcare something that can threaten someone’s job and/or financial security just because they need to go to the doctor.

The reactions of others were surprising: When I started sharing the diagnosis and ultimately the prognosis and need for hearing aids, I got different reactions. Some people chose to make a joke (note: probably not a good idea to make a “what?” joke to a person who just told you they are now deaf in one ear). My guess is these people didn’t know how to respond. Other people reacted like I told them I had a serious disease. I appreciate their sympathy and concern, but felt like it was out of place. I’m not dead. I’m not kept from doing what I like to do. I’m going to be okay. Really.

It’s still pretty freaking annoying: If anything, my left ear is an inconvenience to me. I get frustrated sometimes – I can’t sleep on my right side and hope to hear anything, like an alarm, so I have to be aware of my sleep position. And the tinnitus gets annoying sometimes, but I’ve already adjusted somewhat. It’s tiresome to have to use my right ear for phone calls because now I have to hold the phone with my left hand but write with my right hand, which means I drop the phone. A lot. This may be one of the things I’m most looking forward to fixing with hearing aids. It’s the little things.

Another “lend me your ears” joke. I clearly have a problem.

Why I Shared This Story:

A few reasons. It’s a quick way for me to update people I know but don’t see on a regular basis. It’s a way to help people understand why I may not have been paying attention to them in a crowded setting. I didn’t find much shared from people who experience SSHL, so maybe this will help someone else who finds themselves in this situation. Sharing my story is also a way to help people realize that health stuff hits people anytime, anywhere, for no real reason. So if you’re one of those people who blame people for their health problems, you’re likely to hear from me…and it won’t be pleasant.

I also thought it would be good to shed some light on the challenges of ongoing healthcare for a non-life threatening issue. Loss of hearing in one ear is hardly comparable to cancer, MS, ALS, or any of the other thousands of health issues facing millions of people every day. It does require treatment, though, which includes follow-up care. Does the fact that you can’t immediately notice I can’t hear out of my left ear impact the way you’d react to my requests for time to see the doctor? It could. Do you have an employee who misses a lot of time for doctors’ appointments? Do you find it suspicious? I bet someone in the office has made a joke about job hunting about that person (or even me, for that matter). Our health issues are supposed to be confidential, but make no mistake – people who are managing health issues KNOW others are judging them and often share details they’d rather not share just to avoid the ongoing bullshit and side-eye they get from their coworkers or boss.

I also shared this story because I was surprised at what I learned about hearing loss and mental decline, particularly in the elderly. I hope the National Institute of Health’s study points to some tangible actions we can take to help mitigate this and maybe throw some damn funding towards helping more people get GOOD hearing aids who need them. Technology has improved tenfold (my hearing aids will have an iPhone app), but prices have not come down. Yes, technically you’re getting more for your money now, but that money is a pretty high amount, especially for those on a limited income.

I hope to get my hearing aids fitted some time in January 2018. I’ll keep you posted on what that process is like and how they impact my day-to-day.

In the meantime, sorry if I was only half-listening to you the last time we spoke.

In June 2017, a few days before the national SHRM conference in New Orleans, I noticed that my ears felt kind of clogged, particularly my left ear. I’d had allergies so I wasn’t particularly worried. Then, later in the day, my left ear kind of went dead. As in…couldn’t hear anything at all. I thought my phone was broken because I couldn’t hear the ring tone when I held it up to my ear. Still, I wasn’t worried because I figured it was congestion. I’d just take some Sudafed and use some Swim-Ear to dry it out.

The next morning, I still had no hearing in that ear.

Knowing I was getting on a plane in less than 48 hours (and knowing how PAINFUL it is to fly with a clogged ear), I went to Urgent Care to see what was up. The doctor there took a look up my nose and in my ears and said it was most likely congestion as he didn’t see any infection. Told me to take Sudafed and use nose drops for a couple of days and it would clear up.

Those of you who saw me at SHRM17 knew I couldn’t hear you if you sat on my left side. I suspect a few of you took advantage of that (bless your evil little hearts). By the end of the conference, I was starting to get some hearing back, so I was confident the doctor had been right and I’d be hearing again in no time.

A “lend me your ears” joke. I regret nothing.

Not so much.

Six weeks later, my hearing hadn’t really improved in that ear and I was starting to get tinnitus (not really a ringing – more like what you hear when you hold a seashell to your ear). I went to an ENT (ear-nose-throat) specialist who informed me it wasn’t congestion; rather, I was one of the lucky folks who experience sudden sensorineural hearing loss (SSHL). This was most likely caused by a deep inner ear infection I didn’t even know I had that damaged my cochlea. Even better…it turns out that had the doctor at Urgent Care recognized it, he could have given me steroids that would have given me about a 70% chance of getting my hearing back. As it stood, it was too late to do anything. The ENT said this with such remorse, I had to tell her it was going to be okay.

That first hearing test showed my right ear was fine. But my left ear was down to 75% word recognition.

I was told to give it a few months to see how it stabilized, then get retested. Oh, and I got to get an MRI because in a few cases (not many, but you want to be careful) some people (hardly anyone, but still) turn out to have a benign tumor growing in their ear bones (really, this hardly ever happens, but let’s just be sure).

No tumor. Nothing structurally wrong.

At the time of my second hearing test, I’d developed pulsatile tinnitus (so imagine hearing your heartbeat in your ear REALLY LOUDLY only it sounds squishy). Oh, and my left ear’s word recognition rating went down to around 35% – meaning it can’t really recognize any words at all, and most frequencies are right out.

Because of the pulsatile tinnitus, I was sent to get a CT-scan with contrast because sometimes (not that often, but you want to check) pulsatile tinnitus is caused by a vascular issue, like a growing aneurysm (don’t be worried…but schedule it soon), so it’s good to check these things.

Thankfully, the CT-scan showed no problems. And the technology is wicked cool, but I couldn’t have my eyes open because apparently it would have made them not work anymore. Which is a bummer, because I really wanted to see how it worked. This lack of underlying cause means 1) I’m in the 30% of people for whom there IS no cause of pulsatile tinnitus, and 2) I may never get rid of it. Or it will come and go.

Having been medically cleared of weird ear things, I made an appointment to be fitted for hearing aids.

I’m 43, by the way.

In case you’re wondering, yes – it does kind of suck to be told you have permanent hearing loss. It sucks even more when you did what you’re supposed to do and went to the doctor right away, just to not be given the right treatment. But I’m not mad about that because I was very congested and have had blocked ears my whole life, and the doctor went with the diagnosis that was the most likely scenario (when you hear hooves, think horses, not zebras). It could have had a better outcome, but wasn’t guaranteed. Besides, I can’t do anything about it now, so what’s the point? And my right ear is still at 100%.

I was mostly worried because I’m a singer. And you really need to be able to hear the people around you (and yourself) to be able to sing properly. Luckily, it didn’t impact me TOO much – I just noticed I had to listen differently. I’m sure it impacted my pitch a bit, but no one threw anything at me, so I’m calling it a win.

I do notice that in crowded areas, or in a group discussion, it’s hard to follow anything going on across the way or from my left side. This causes me to pull back in group settings even more than I normally would because it’s just too tiring to try and follow everything that’s being said. I figured if someone REALLY needs me to respond, they’ll repeat themselves.

I’m not writing about hearing aids just yet, because this happened in 2017. Hearing aids are expensive and I need my flex spending account to kick in so I can go buy said hearing aids. I need 2 because just amplifying sound in my left ear would be useless (I’d hear mush LOUDER, which seems pointless). So I will have a receiver in my left ear that will transmit sound from that side to a hearing aid in my right ear, which will interpret the sound as though it’s coming from my left. HOW COOL IS THAT??? Hearing aid technology has come a long way. And I’m hopeful it will help the tinnitus. Basically, tinnitus is a result of your brain freaking out that it can’t hear something from an ear anymore, so it creates fake sound to trick itself into thinking the ear is working. It’s like phantom pain from a missing limb. Our brains are so freaking weird.